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What FTD Looks Like: Part 2 – Candy and disinhibition

I shared Robert’s encroaching apathy in my first story about his symptoms. Soon after he was diagnosed with bvFTD , Robert began operating without thought to the implications or consequences of his behavior. Living “boundary-free”, Robert did things that he would never have done had his brain been intact. He lost his social inhibitions. His “disinhibition” made for an exciting romp around town. For him…not so much for everyone else.

Early bvFTD symptoms

FTD patients manifest a few hallmark obsessions as the disease progresses. One is an insatiable desire for sweets.

Robert left the house each morning (initially unsupervised) with $1.25 and headed to our local grocery store to buy a candy bar. Snickers bars were his favorite. He’d eat the candy as soon as he left the store. One day he returned home with a second candy bar for “tomorrow” (eaten as he was explaining this to me). I assumed he’d managed to scrounge up another dollar and change to make this second purchase.

“I didn’t have enough money for the second candy bar so I put this one in my pocket.”

“But that’s stealing, honey! You can’t do that. You need to pay for the things you take from the store.” 

“I do?” 

He really did not understand that he couldn’t just take things he wanted. What we were experiencing was his growing disinhibition and his drive to find sugar. 

Robert as Christmas elf on Halloween

Sugar is the thing

In December of 2019, we welcomed our first grandchild into the family. Jackson and I were thrilled to visit Maddie, Trent, and our new grandson, Lincoln, in the hospital. Robert was somewhat indifferent. We offered to bring in some food and other supplies since the kids would be staying for a couple of days. They were happy to take us up on the offer so we headed to the grocery store. We lost track of Robert once we got there. He disappeared while Jackson and I struggled to decide on a flower arrangement for the new parents (lillies? orchids?).

Looking across the vast aisle of checkout lines, we spied him on the other side of the store at the candy display. He luxuriated in the consumption of a Snickers bar, staring off into space, tapping his foot, thinking of a comedy routine or somesuch. As we looked on in frozen silence, he turned and made a great prancing display of throwing the wrapper behind himself as a child might do. We paid for the candy wrapper at checkout. Theft supervision would turn out to be the easiest of our interventions.

This last incident was both funny and not funny. It looked funny…the way Robert was so dramatic and obvious with his release of the candy wrapper. But it was also poignant and bittersweet for Jackson and me. Just hours earlier, we had welcomed a new person into the family and now we were watching the man we both loved slip away. 

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